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        Cluster Headache Help and Support >> Cluster Headache Specific >> Starting meds
        
(Message started by: soni on May 31^st, 2006, 4:45pm)

Title: Starting meds
Post by soni on May 31^st, 2006, 4:45pm

Because my headaches last for several hours during the day, they are going to do a CT scan to check for other problems. The doctor said everything else seems to fit CHs and started me on prednisone and verapamil. I don't know what to expect, will i have another terrible headache tomorrow like I did today? is there any good news about this?

Title: Re: Starting meds
Post by E-Double on May 31^st, 2006, 5:54pm

Do they seem to creep and linger for hours and then HIT only to decrease after?

There is some research suggesting that there are atypical CH which do last longer than classic but the attacks are peaking longer and still have the same characteristics.

As far as meds go.......

Steroids:
You will eat your textbooks and you may develop moon face. You may possibly become irritable and may have a speedy feeling.

Verapamil:
Can cause lethargy and CONSTIPATION.
some get it some do not. I was regular yet remained lethargic until verapamil was changed from extended release to immediate. The research suggests that you use the immediate or standard NOT extended/sustained.

Good luck!!!

Title: Re: Starting meds
Post by Guiseppi on May 31^st, 2006, 6:52pm

Verapamil didn't work for me 15 years ago but I know now the dose was way too low. The prednisone offers me almost immediate relief at dosages as low as 30mg a day. What E-Double says is true about the prednisone, some side effects but it's a good short term solution while you wait for the other meds to kick in. Wishing you luck with the diagnosis!!!!

Guiseppi

Title: Re: Starting meds
Post by Kris_in_SJ on May 31^st, 2006, 6:58pm

Hi,

Like Eric, I can tell you that the Pred will make you eat everything in sight. Flying seagulls suddenly start looking like fried chicken. However, with clusterheads, a Pred taper can sometimes knock out a cycle within a few days. Meantime the Verapamil is taking hold and when you've tapered off the Pred, it hopefully is working in your system.

Personally, the only problem I've ever had with Verapamil is the constipation thing. Never had lethargy or dizziness or anything abnormal. Eat lots of fiber and water, water, water! 480mg/day is the magic dose for me and many here. Low doses like 120mg or 240mg just don't do it for most of us. Word of warning - though effective, Verapamil can take awhile to wean off of once your cycle is complete.

Meantime, it's certainly wise to have the tests done to rule out other and more nasty conditions. Though, I had a cluster last 3 hours once before I was diagnosed. I was certain the pain would kill me - so I feel for you.

Be sure to ask your doc about an abortive like Oxygen or Imitrex Autoinjects. Nobody should have to suffer for 3 hours with a cluster attack.

Hugs,

Kris

Title: Re: Starting meds
Post by soni on May 31^st, 2006, 7:22pm

Thank you everyone for your replies. I am taking Verapamil 360mg (tapering up to that in 6 days) extended release and prednisone 60 tapering to 5 in 8 days. My pain ended at 430 today before taking the meds for the first time although my attack lasted a little over 4 hours from start to finish. The sharp stabbing pain was about 3 hours. The doctor at Jefferson is very knowledgable about the oxygen and imitrex injections and was surprised how much I knew before talking to him.

The main reason i posted was to see about what I should expect as far as this hell I've experienced today. Now that I am on prophylaxis meds and will be getting imitrex shortly, does life improve? I mean can you still live a happy life and work daily with chronic CH? This is all new to me, im scared..

Title: Re: Starting meds
Post by Jonny on May 31^st, 2006, 7:59pm

on 05/31/06 at 19:22:42, soni wrote:

I mean can you still live a happy life and work daily with chronic CH? This is all new to me, im scared..

I did for 30 years starting at 12 years old, one day I woke up and they were gone.

Dont be scared, we all will help you get this under control, Sweetie!!!

Title: Re: Starting meds
Post by soni on May 31^st, 2006, 8:57pm

Is there any kind of trend to this? Will my future cycles be characteristic of this one in duration and intensity? Also what gets everyone through the 6 weeks or so of agony, use imitrex that much?

Title: Re: Starting meds
Post by Jonny on May 31^st, 2006, 9:27pm

on 05/31/06 at 20:57:17, soni wrote:

Is there any kind of trend to this? Will my future cycles be characteristic of this one in duration and intensity? Also what gets everyone through the 6 weeks or so of agony, use imitrex that much?

The first thing you need to know is that when you have "Chronic CH" you never get a break from the pain. for years!

When you have cycles you are "Episodic" and you can go months or years pain free.

Where do you fall in this?

Title: Re: Starting meds
Post by soni on May 31^st, 2006, 10:44pm

I've just had very bad headaches for 7 days now. First time ever so Im not sure whta will happen and that has me nervous

Title: Re: Starting meds
Post by Mr. Happy on Jun 1^st, 2006, 1:55am

The first time is always the worst. It'll go away, you'll forget about it, then it'll happen again in a year or two. You'll think "Oh Crap, not this again" and go thru the whole rigamarole again......meanwhile, yer crapping your pants from the Onset of this.

Bookmark this place. Usually, there's no quick fix, but sometimes some of the locals get lucky. You're not a chronic CHead yet, but this is a chronic problem that keeps re-occuring as time passes. Lotsa ways to deal with it, none of them Fail Safe.

Try standard release Verapamil, instead of the time release stuff. Break your daily dose into 3 eight hour separated equal events. PITA, but may help achieve desired results.

What I know about CH will fit into a thimble, and there'll still be room for a swing set.
RJ

Title: Re: Starting meds
Post by BarbaraD on Jun 1^st, 2006, 6:59am

The first time is the worst... You go thru the "Have I got a brain tumor" stage and the pain scares the hell out of you -- no one understands, etc, etc.

As everyone has told you -- this will pass - and you'll forget it till the next time.

I went thru years of "episodic" cycles and then in 97 they just never quit. You learn to cope with it.. But be glad you're not chronic - it's a bitch. I'm hoping to wake up (like Jonny) and have them gone. But until then.....

Just hang in there and ask as many questions as you need. This is the best place for a CHer in the world.

Hugs BD

Title: Re: Starting meds
Post by soni on Jun 1^st, 2006, 7:19am

I admire your strength...how much time out of a day is spent with the extreme pain if you are chronic? Injections help you live more normally? I do not know what I am because my first cycle ever has not yet ended, im taking good notes as to when pain occurs etc. Worst case seems to be a chronic sufferer so I would like to know as much about what thats like as possible to be ready for all outcomes with this. Thanks so much, seems no one understands...

Title: Re: Starting meds
Post by BarbaraD on Jun 1^st, 2006, 7:08pm

That's what this message board is all about. WE understand cause we're going thru it with you. Unless you've experienced the pain of CH - you can't understand what it does to you. But you learn to cope with it (after you go thru denial, anger etc.).

I keep my four year old grandson about 12 hours a day and have an accounting firm (he helps me "work"). When the CH hits, he gets out the O2 and tells me to "Breathe Granny!" And when it passes, he gives me big hugs and it's all better. But he's learned to stay away from Granny till she gives the all clear - I can't stand to be touched when I'm going thru a hit and will lash out without thinking.

I can usually abort them if I get to the Red Bull or coffee pot at the very first sign, but if it revves up, I have to hit the O2 and a lot of times the cafergot (Hate that stuff, but hate the pain worse).

But the one thing you'll learn as you deal with these things is to NOT let them control YOU. The first time is scary and I won't tell you you'll ever get used to them, but you'll learn to cope and lead a fairly normal life -- but it has a lot to do with your attitude. You'll get used to people not understanding after a while and just learn to live with it. (Not to say you wouldn't like to stick a poker thru their eye just to let them know how you feel, but.......).

The one place you can say anything you want is on this board cause someone has been thru what you're feeling right now and we're here for support. We UNDERSTAND...

Hugs BD

Title: Re: Starting meds
Post by Kris_in_SJ on Jun 1^st, 2006, 7:34pm

Soni,

While I understand you want to learn everything that you can about this syndrome, at this point in your diagnosis it's not good that you worry about becoming chronic.

Cluster Headache Syndrome is a chronic condition in that, for most of us, it comes and goes in episodes. Those episodes can be twice a year or only once every 3-5 years, like me. The term "chronic cluster headaches" means you suffer 365 days a year. I urge you not to worry about what category you're in - just focus on getting past your symptoms this time around.

At this point in your fight, you're in what is probably your first ever cycle. Chances are good that in a few weeks it will be over. Yes, it will come back - but until you've had a few cycles, you won't know your particular pattern.

Don't be scared by possibilities - just fight what's in front of you right now.

Hugs,

Kris

Title: Re: Starting meds
Post by soni on Jun 1^st, 2006, 7:53pm

thanks again...i started the pred/verap initial treatment yesterday and have had two headache free days in a row. There is a little twinge of pain but nothing i would have taken motrin or APAP for even in the past. Tomorrow is my CT scan, so I ask for your best wishes and prayers. I prepare myself to understand the chronic sufferers experiences because I am just one of those people that prepares for the worst and hopes for the best. I also know 2 episodic CH people that work at jefferson with me and they hold doctor of pharmacy degrees and work Monday thru Friday jobs pretty normally ( I actually never knew they were CH's until I was taken to the ER and everyone in the pharmacies got the news). I'll keep everyone updated, not sure if anyone is following me, but I like talking about this here, I've felt your pain..